Trends and projections in the burden of congenital heart disease among children under 5 years, 1990–2035

Introduction

Congenital heart disease (CHD), a structural anomaly of the heart and/or major blood vessels present at birth, remains a major global public health challenge. Annually, CHD causes approximately 300,000 deaths, with two-thirds occurring in infants younger than 1 year of age (1). As a leading cause of preventable deaths from congenital anomalies, CHD underscores the continuing need for research and effective interventions, particularly through timely diagnosis and treatment (2). Advances in pediatric medicine, catheter-based intervention, surgery, and international health collaboration have contributed to a substantial global decline in the CHD crude mortality rate, from 7.1 per 100,000 in 1990 to 2.8 per 100,000 in 2019 (3,4). Nevertheless, marked geographical disparities persist. In low- and middle-income countries (LMICs), CHD remains a leading cause of death and disability among children under five years of age (5). Although survival has improved, survivors often face long-term complications related to surgery, postoperative care, secondary organ dysfunction, and residual anatomical or hemodynamic abnormalities (6). These complications increase the risk of chronic conditions such as heart failure and pulmonary hypertension and can substantially impair quality of life, educational attainment, and social participation (7,8).

Understanding the epidemiology of CHD is essential for healthcare planning, resource allocation, and the design of interventions that balance survival with sustained health. The Global Burden of Disease (GBD) study provides detailed health indicators using standardized methods and globally comparable data (9). Although prior GBD studies have examined CHD prevalence and mortality (1,10), comprehensive assessments focusing specifically on children under 5 years of age remain limited. We selected the study period 1990–2021 because it represents the full, internally consistent annual time series available in GBD 2021, thereby enabling an assessment of three decades of historical change before projection. Therefore, this study analyzed GBD 2021 data to assess the burden of CHD—measured in deaths and disability-adjusted life years (DALYs)—among children under 5 years of age at the global, regional, and national levels from 1990 to 2021. By examining disparities across regions, time, age groups, and sociodemographic status, and by projecting future trends, we sought to provide evidence that can inform policy, guide resource allocation, and direct future research. We present this article in accordance with the STROBE reporting checklist (available at https://tp.amegroups.com/article/view/10.21037/tp-2026-0222/rc).

Methods

Data sources

We used data from the GBD 2021 database, maintained by the Institute for Health Metrics and Evaluation (IHME). This database applies standardized methods to estimate the epidemiology and burden of 371 diseases and injuries across 204 countries and territories, stratified by age, sex, year, and location (11,12). CHD-specific methods in GBD 2021 have been described elsewhere (10). Data are publicly available through the Global Health Data Exchange Results Tool. We selected 1990–2021 because 1990 is the first year with consistently modeled GBD estimates and 2021 is the latest year available in GBD 2021, permitting an internally consistent evaluation of long-term trends before forecasting. Because this study relied on anonymized aggregate data, neither ethics approval nor informed consent was required. This study was conducted in accordance with the Declaration of Helsinki and its subsequent amendments

Definition

Children under five years of age were stratified into five age groups: 0–28 days, 1–5 months, 6–11 months, 12–23 months, and 2–4 years. We assessed deaths, DALYs, and their corresponding rates. DALYs provide a comprehensive measure of the years of life lost (YLLs) due to premature mortality and the years lived with disability (YLDs) (11). Because GBD 2021 reports congenital heart anomalies as an aggregate cause within this age range, lesion-specific severity stratification was not available for the present analysis.

Socio-demographic Index (SDI)

The SDI is a composite measure based on lag-distributed income per capita, average educational attainment among individuals aged 15 years or older, and the total fertility rate among women younger than 25 years. It ranges from 0 (lowest) to 1 (highest) and reflects a region’s level of development as it relates to health outcomes. Countries and territories were categorized into five SDI strata (low, low-middle, middle, high-middle, high) to explore disparities in CHD burden (13).

Statistical analysis

DisMod-MR 2.1, a Bayesian meta-regression tool, was used to model CHD burden, generating 500 draws for final estimates with 95% uncertainty intervals (UIs), consistent with standard GBD uncertainty estimation (14). Temporal trends were assessed using the estimated annual percentage change (EAPC), derived from a log-linear regression model of mortality and DALY rates. A trend was considered decreasing if the upper limit of the 95% confidence interval (CI) of the EAPC was below 0, increasing if the lower limit of the 95% CI was above 0, and stable otherwise (14). Burden rates were further compared across SDI strata. Spearman correlation analyses were used to assess the association between CHD mortality and DALY rates and SDI at the global, regional, and national levels (15).

Disease burden projections

The future burden of CHD in children under 5 years of age was projected to 2035 using Bayesian age-period-cohort (BAPC) modeling. This model accounts for age, period, and cohort effects on disease counts and is formally expressed as:

nij=log(λij)=μ+αi+βj+γk[1]

where α_i, β_j, and γ_k represent the age, period, and cohort effects, respectively, on the count of CHD cases (λ_ij), and μ represents the intercept (16). All statistical analyses and data visualizations were performed using R (version 4.4.2). A two-sided P value <0.05 was considered statistically significant.

Results

Global trends

Between 1990 and 2021, the global burden of CHD in children under 5 years of age decreased substantially (Tables 1,2). Deaths declined by 56.2% (from 466,156.7 to 204,223) and DALYs by 55.7% (from 42.0 million to 18.6 million). Correspondingly, mortality rates fell from 75.2 to 31.0 per 100,000 (EAPC =−2.6; 95% CI: −2.7 to −2.5), and DALY rates fell from 6770 to 2826 per 100,000 (EAPC =−2.5; 95% CI: −2.7 to −2.4). Marked age- and sex-related differences were observed in deaths, DALYs and their corresponding rates. The neonatal period (<28 days) carried the highest mortality risk and disease burden. In 2021, the neonatal mortality rate was 914.50 per 100,000 for males and 595.26 for females; the neonatal DALY rate was 82,368.99 per 100,000 for males and 53,645.06 for females. With the exception of the 12-23 months age group, males had higher mortality and DALY rates than females across all periods. From 1990 to 2021, all age groups showed a continuous downward trend in both rates, as shown in Figure 1.

Figure 1 Age- and sex-specific deaths, DALYs, and corresponding rates of congenital heart disease among children younger than 5 years, 1990–2021. (A) Number of deaths and death rates by age group and sex in 2021. (B) Number of DALYs and DALY rates by age group and sex in 2021. (C) Trends in death rates by age group from 1990 to 2021. (D) Trends in DALY rates by age group from 1990 to 2021. Bars represent the absolute number of deaths or DALYs, lines represent rates per 100,000 population, and error bars or shaded areas indicate 95% UI. DALYs, disability-adjusted life years; UI, uncertainty interval.

SDI trends

In 2021, the low-SDI region had the highest counts and rates of CHD deaths and DALYs, while the high-SDI region had the lowest. Improvements were smallest in low-SDI regions over the study period. The largest declines occurred in high-middle SDI regions: mortality rates fell from 74.7 to 14.7 per 100,000 (EAPC =−5.3; 95% CI: −5.7 to −5.0), and DALY rates fell from 6724.9 to 1370.4 per 100,000 (EAPC =−5.2; 95% CI: −5.5 to −4.9), as shown in Tables 1,2 and Figure 2.

Figure 2 SDI-stratified trends in death and DALY rates of congenital heart disease among children under 5 years of age, 1990–2021. (A) Death rates. (B) DALY rates. DALYs, disability-adjusted life years; SDI, Socio-demographic Index.

Regional trends

In 2021, South Asia bore the highest burden, with 46,943.3 deaths and 4.29 million DALYs, whereas Australasia had the lowest, with 85.7 deaths and 7,702.0 DALYs. CHD was the leading cause of death and DALYs among birth defects in all 21 GBD regions in both 1990 and 2021, as shown in Figure S1. Oceania had the highest mortality rate (78.8 per 100,000) and DALY rate (7,092.6 per 100,000), whereas Australasia had the lowest, as shown in Tables 1,2.

From 1990 to 2021, the High-income Asia Pacific region showed the greatest decline in deaths (−89.2%), and East Asia showed the largest reduction in DALYs (−88.4%). In contrast, Oceania, Western Sub-Saharan Africa, and Central Asia experienced increases in both deaths and DALYs. East Asia achieved the steepest declines in rates (EAPC for mortality: −5.8; for DALYs: −5.7), while Central Asia was the only region with a significant increasing trend in mortality rate (EAPC =0.6), as shown in Tables 1,2.

National trends

In 2021, India recorded the highest number of deaths (32,879.4), and China recorded the highest number of DALYs (1.1 million). Afghanistan had the highest mortality rate (146.2 per 100,000) and DALY rate (13,151.0 per 100,000), whereas San Marino and Andorra had the lowest mortality and DALY rates, respectively. From 1990 to 2021, 12 countries saw increased mortality rates and 11 saw increased DALY rates. Guatemala experienced the largest increases, whereas Belarus and Saudi Arabia showed the most substantial declines in mortality and DALY rates, respectively, as shown in Figure 3 and Tables S1,S2.

Figure 3 Death and DALY rates for congenital heart disease among children under 5 years of age across 204 countries and territories in 2021. (A) Death rates. (B) DALY rates. DALYs, disability-adjusted life years.

Correlation between burden of CHD and SDI

Spearman correlation analysis revealed a strong negative association between SDI and CHD burden (Figure 4). For the global total and the 21 GBD regions from 1990 to 2021, the correlation coefficient (r) between mortality rate and SDI was −0.81, and that between DALY rate and SDI was −0.80 (both P<0.001). Similarly, across 204 countries and territories in 2021, the correlations were −0.77 for both mortality and DALY rates (P<0.001). These findings indicate that higher levels of development are associated with lower CHD burden. For example, high-SDI countries such as Norway and Sweden had much lower rates than low-SDI countries such as Afghanistan and Haiti.

Figure 4 Death and DALY rates of congenital heart disease among children under 5 years of age across the globe and 21 GBD regions by SDI, 1990–2021. (A,C) Death rate. (B,D) DALY rate. DALYs, disability-adjusted life years; GBD, Global Burden of Disease; SDI, Socio-demographic Index.

Future projections

Using BAPC modeling, we project that by 2035, global CHD deaths among children under 5 years of age will decline to approximately 100,943, with a mortality rate of 15.9 per 100,000. DALYs are projected to fall to 9.28 million, with a DALY rate of 1,462 per 100,000, as shown in Figure 5.

Figure 5 Projected global trends in deaths, DALYs, and corresponding age-standardized rates of congenital heart disease among children under 5 years of age from 2021 to 2035 based on BAPC models. (A) Number of deaths. (B) Number of DALYs. (C) Age-standardized death rate. (D) Age-standardized DALY rate. BAPC, Bayesian age-period-cohort; DALYs, disability-adjusted life years.

Discussion

We conducted a comprehensive analysis of the latest GBD data, focusing on the global patterns, regional distribution, and temporal changes in CHD-associated deaths and DALYs among children under 5 years of age. Our findings show a substantial reduction in burden since 1990, with deaths decreasing by 56.2% and DALYs by 55.7%, accompanied by annual declines of 2.6% in mortality rate and 2.5% in DALY rate, respectively. Notably, the neonatal period showed the greatest absolute improvement. Although high-SDI regions led the decline in CHD-associated deaths and DALYs, contrasting trends persisted in regions with lower SDI, highlighting continuing inequities in access to high-quality care. Projections based on recent trends suggest that the global downward trajectory in CHD-associated deaths and DALYs is likely to continue through 2035. Taken together, these findings indicate that progress in CHD outcomes has been substantial at the population level, but it has not been translated evenly into clinically meaningful benefit across regions, health systems, and stages of early life.

As the leading contributor to the global burden of congenital anomalies, CHD not only increases the risk of death among children under five years of age but also contributes substantially to DALY loss by compromising long-term quality of life (17). The decline observed in this study is likely multifactorial rather than attributable to any single intervention. In addition to earlier diagnosis, improvements in postnatal screening, referral efficiency, pediatric cardiac surgery, catheter-based intervention, perioperative anesthesia, neonatal and pediatric intensive care, and postoperative follow-up have probably acted together to reduce mortality and disability. Prenatal ultrasound screening and integrated prenatal-postnatal management models have improved detection, cure rates, and long-term prognosis (18,19). Recent reports from Shanghai and Jiangsu further show that large-scale newborn CHD screening can be embedded successfully within regional public-health systems and linked to diagnostic and treatment networks (20,21). China provides a useful country-specific example in this context: recent work has emphasized tiered prevention and treatment strategies, integrated prenatal-neonatal pathways, and the gradual strengthening of specialized CHD services, although important interprovincial gaps in downstream capacity remain (22). Importantly, the clinical benefit of screening depends not only on identifying cases early but also on the speed with which children move from detection to confirmatory diagnosis, referral, stabilization, and definitive repair or palliation, as well as on the availability of perioperative intensive care resources.

Governments and international organizations have also advanced public-health policies, health education, and prevention programs targeting birth defects such as CHD while fostering the development of more structured healthcare systems. These efforts include the establishment of CHD diagnosis and treatment networks, enhancement of screening capacity in primary care institutions, and promotion of multidisciplinary collaboration to ensure timely, high-quality care for affected children, thereby reducing mortality and improving quality of life (23,24). These observations are consistent with the reviewer’s concern that epidemiologic improvement should be interpreted in the context of health infrastructure, funding mechanisms, workforce expansion, and system-level organization rather than screening alone. In this regard, the especially steep declines observed in East Asia and the High-income Asia Pacific region may reflect sustained investments in screening networks, specialized referral pathways, tertiary cardiac centers, and perioperative care capacity, whereas slower progress in low-SDI settings likely reflects persistent structural constraints.

Our results also reveal profound regional disparities in the global burden of CHD, with SDI showing a strong inverse correlation with disease burden. High-income countries have a clear advantage in the management of pediatric CHD, owing to greater availability of pediatric cardiac surgical resources, advanced medical technologies, and more comprehensive healthcare systems (1). These advantages enable most patients to receive timely and effective surgical intervention, thereby reducing preventable CHD-related mortality and lowering the risk of later comorbidity. A long-term follow-up study showed that patients with simple CHD face a higher lifetime risk of complications than healthy individuals; specifically, patients with atrial septal defect are more prone to stroke, whereas those with ventricular septal defect are more susceptible to myocardial infarction and heart failure. Timely surgical intervention can significantly reduce these risks (25). Moreover, although delayed diagnosis or delayed surgery may not always lead to poor survival in the short term, such delays can have profound effects on neurological, cognitive, and psychosocial functioning (26). These findings suggest that reductions in CHD burden are not simply a matter of detecting more cases, but of treating them earlier and more effectively within mature healthcare systems.

In stark contrast, LMICs continue to face multiple barriers, including severe shortages of pediatric cardiologists, inadequate primary and specialist services, fragmented referral and patient transport systems, and limited access to definitive surgical treatment (3,27-29). This unequal distribution of resources creates major disparities in care quality and limits the ability of children with CHD in LMICs to access care comparable to that available in high-income settings. Further compounding this burden, children with CHD in LMICs often experience comorbid infections, malnutrition, and complications related to disease progression, such as pulmonary hypertension and heart failure (30,31). These factors further compromise prognosis and quality of life and place these children at a marked disadvantage in disease management and long-term wellbeing. Recent systematic review evidence also indicates that barriers in LMICs span the entire care continuum, including delayed diagnosis, financial constraints, difficulties reaching treatment centers, limited hospital resources and workforce, shortages of critical care capacity, and inadequate postoperative follow-up (27). From a policy perspective, regions that have invested in referral systems, congenital cardiac centers, insurance coverage, and workforce training are more likely to achieve faster declines in mortality and DALYs, whereas the absence of such policies may contribute to persistently poor outcomes.

Over the past three decades, although CHD-related mortality and DALYs have generally declined globally and across SDI strata, disparities persist in both the rate of decline and the absolute burden across age groups. Notably, the neonatal period has experienced the greatest reduction, likely owing to improvements in the accuracy and timeliness of prenatal CHD diagnosis and to advances in neonatal intensive care (22,32). These developments have enabled more prompt and effective treatment for newborns with complex CHD. However, as these children age, they may still face cardiac remodeling, declining function, arrhythmias, and other sequelae that can adversely affect quality of life and social participation (33). Alarmingly, despite the observed improvement, the neonatal period still carries the heaviest CHD burden, underscoring the need for strengthened early diagnosis, rapid referral, timely intervention, and more equitable allocation of specialized resources.

Anticipating the future, we have projected the health indicators associated with CHD among children under the age of 5 years globally through the BAPC model, drawing upon current trends. It is anticipated that by 2035, the global CHD-associated mortality and and DALY rate will continue their downward trajectory. Nevertheless, to achieve this goal and bridge the gaps between regions, the collective efforts of all nations and regions worldwide are imperative. Moving forward, we must persist in advancing and broadening access to prenatal diagnostic technologies, fostering a more equitable distribution of medical resources, and ensuring that newborns with CHD from all regions and backgrounds can promptly obtain effective treatments (34,35). Additionally, reinforcing public education and enhancing parental awareness stands as a crucial strategy to alleviate the burden of CHD. By disseminating knowledge about CHD and elevating parents' understanding and recognition of the disease, we can motivate more families to engage in the early diagnosis and treatment process for affected children. This endeavor will not only enhance treatment outcomes and improve the quality of life for patients but also mitigate the overall societal burden of CHD on a grander scale (36).

Several limitations should be acknowledged. First, GBD 2021 reports CHD as an aggregate cause for this age range and does not provide lesion-specific or severity-stratified estimates. Accordingly, we could not distinguish critical or complex CHD from less severe lesions, which limits direct clinical applicability. Second, GBD estimates are model-based and therefore inherit uncertainty from heterogeneous data sources and underlying assumptions. Third, the database does not provide detailed information on timing of repair, access to surgical or interventional treatment, perioperative intensive care resources, screening uptake, referral delays, or outcomes according to treatment status, preventing direct quantification of the mechanisms driving the observed improvements. Fourth, as an ecological analysis, this study cannot establish causality between SDI and CHD burden. Finally, future projections should be interpreted as scenario-based estimates rather than precise forecasts, because they remain vulnerable to unforeseen changes in policy, technology, and socioeconomic conditions.

Conclusions

In summary, the global burden of CHD in children under 5 years of age has declined markedly since 1990, but the benefits of progress remain unevenly distributed. The neonatal period and low-SDI settings continue to bear a disproportionate burden. Earlier detection must be matched by stronger referral systems, pediatric cardiac treatment capacity, perioperative intensive care, and supportive health policies. Future work linking burden estimates with lesion-specific registries and treatment-access indicators will be essential for improving clinical interpretability.

Acknowledgments

We appreciate the high-quality data provided by the GBD 2021 collaborators.

Footnote

Reporting Checklist: The authors have completed the STROBE reporting checklist. Available at https://tp.amegroups.com/article/view/10.21037/tp-2026-0222/rc

Peer Review File: Available at https://tp.amegroups.com/article/view/10.21037/tp-2026-0222/prf

Funding: None.

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://tp.amegroups.com/article/view/10.21037/tp-2026-0222/coif). The authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. This study was conducted in accordance with the Declaration of Helsinki and its subsequent amendments.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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